MPN or CMML?

[Bittebitt]

The mystery goes on. A couple of weeks ago, I had my fourth bmt in nine months. Still no clear diagnosis, therefore I will be sent to Oslo University Hospital where Norway's top experts work. The haematologists at my hospital say that a tentative diagnosis is either cmml or a type of mdn. They are top experts themselves, therefore I believe them when they say that I'm a hard nut to crack. A short resumé: Sjogren's syndrome since many years ago. Pneumonia mai/june 2015. Three different antibiotics, the last one together with prednisolone. Probable Polymyalgia from july, confirmed in october. By the way, sometimes Polymyalgia can follow malignancy. All the bmt's conclusions say possible mpn, cmml or rheumatic reaction. I certainly don't follow the book! Have any of you heard about a case like this? Hope you understand what I'm writing, I'm Norwegian, therefore my english is a bit rusty😉

[AndyT]

Hi Bittebitt - your English is very clear but it seems your diagnosis isn't..! I hope that the doctors in Oslo manage to give you a more definitive diagnosis - do you know if they already did blood tests for the JAK2 and CALR genetic mutations, which can help to confirm an MPN diagnosis..? Best of luck, Andy

[Bittebitt in reply to AndyT]

Hi Andy.

Thank you for your answer

The JAK 2 V617F test was taken april 12. Haven't got the answer. I have all the test answers from july 2015 and after. Can't find CALR. cytogenetics were normal in february (bone marrow test).

[AndyT in reply to Bittebitt]

If JAK2 is negative it is worth testing for CALR. I have ET and am JAK2 -ve but CALR +ve (I don't think you can be both..!) CALR is a more recently discovered genetic mutation linked to ET and PV that we've been tested for in the UK for about 3 years now...

[Bittebitt in reply to AndyT]

I have thrombocytopenia. The numbers have fallen from 94 last july to 32 now.

[francesb]

Hi

I am an "unknown/unclassified" too and my consultant refers to me as "possible CMML/MPN unclassified", in other words nobody knows! I am Jak2 positive. It all started with a very high white count and very enlarged spleen. These were brought under control by 17 cycles of chemotherapy which was very tough, but then my platelets shot up to over 2,000 possibly caused by the chemo so that was stopped 6 months ago and I've been on Hydroxycarbamide since then which has at last thankfully brought the platelets down. I'm on a high dose of 1mg for 5 days per week and 1.5 mg the other two days, but it's worked so far and all my FBC results are now within normal range. Consultant says that to need this high dose shows that my bone marrow is very proliferative. However he says the fact that I was in good health generally, other than a bit of arthritis, when all this started, has helped get things under control. I used to research and a worry about what was wrong with me and try and find a clear diagnosis but now, 3.5 years on, I ignore it as best I can and just get on with life. They have searched extensively for a stem cell transplant donor for me but never found a match. Worst symptom is fatigue that hits me later in the day so I plan my activities around that. Hope you are not feeling too poorly, sounds like your hospital is working hard to help and support you. best wishes, Frances.

[Bittebitt in reply to francesb]

Hi Frances😊

Thank you fo your answer. Unlike you, my platelets are quite low. Only 32 in my last blood workup. Monocytes are a bit high. Wbc (don't remember the counts, think they are a bit low) have a slightly abnormal shape, my haematologist told me last time I met him. Fortunately, I feel fine👍

[Shelly1960]

how did you get on in oslo and your english is very clear indeed i am also unclassified and like fances did lots of research but now juat keep an eye on my symptoms hope you are well michelle

[Bittebitt in reply to Shelly1960]

Ho Michelle😊

I'm still waiting for the appointment. We have a very good health care system when it comes to treatment here in Norway, but the time you have to wait for appointment can be very long, exept when there is an emergency.

I'll let you know when I have been in Oslo.

Anne-Britt😊

[Shelly1960]

thANK YOU FOR YOUR REPLY AND TRY NOT TO WORRY OVER TIME YOU WILL UNDDERSTAND WHAT IS HAPPENING WITH YOUR BODY AND THAT WILL GIVE YOU OPEACE OF MIND AM HERE IF YOU WANT TO CHAT AT ANYTIME AND WISH YOU WELL SORRY CAUGHT CAPS NOT VERY GOOD ON PC

[Bittebitt]

TTT (things take time)! My appointment in Oslo is almost two months from today. And on my birthday! Not impressed with our NHS at the moment! I have already waited for a diagnosis more than a year. Can't be seriously ill, I think? Trying to keep my spirits up, but I'm beginning to lose my patience😒